additional: My Son start off just having one single febrile seizure, he stayed in the hospital for three days after been discharged he was sent home with a bottle of Valproic acid for precaution he was supposedly to take 1/2 twice a day.
cause: My son was also told that he was delayed in his speech and I'm begining to wonder if it has anything to do with his Seizure Disorder.
date diagnosed: 05/16/02 and 9/12/09 LGS
type(s) of seizures: GENERALIZED THAT INCLUDES GRAND-MAL, ATONIC SEIZURES, AND ABSENCE SEIZURES. He also have many many different types now and non convulsive status seizures
frequency of seizures: AS OF 2004 I NOTICE MY SON BEEN CONSTANTLY FALLING DOWN AS IF HE ENJOYS THE PAIN OF FALLING DOWN, BUT COME TO FIND OUT HE'S HAVING ANOTHER FORM OF SEIZURE WHICH NEUROLOGIST AND EPILEPSY SPECIALISTS CALL DROP ATTACKS OR A TONIC SEIZURES, HE'S FALLING AT LEAST 20 TIMES A DAY
additional health issues: Delayed in his speech don't know if it has anything to do with his Seizure disorder. My son starting saying words that isn't clear to understand at the age of one and now it's looks as though it may start getting a little better.
UPDATE: 8-6-2004 MY SON WAS DIAGNOSED WITH AUTISM AND ATTENTION DEFICIT DISORDER (ADD) HE'S ALSO HAVING WHAT IS BEING DESCRIBED AS DROP ATTACKS. Paroxysmal Dystonia, Global Delayed
positive effect: Haven't had a Grand-Mal Seizure since August
side effects: HyperActivity, Loss of Appetite, Mood Changes,
comments: My son has always be considered a good three year old, but with this medication he is more Hyper Active than usual, his mood changes is apparent and He doesn't eat like he use to eat .
Clonazepam (Klonopin, Rivotril)
still being used: Yes
effectiveness: Unknown
max. dose: 1 mg three times a day
positive effect: kept his gran-mal seizures under control
side effects: Liver Problems, increased drooling, hyperactivity, mood swings.
comments: This medication was added in June when he was continously having seizures, I really don't know the side affect of this medication because it is taken along with the Valproic Acid
Lamotrigine (Lamictal)
still being used: Yes
effectiveness: Positive
max. dose: 100 mg Twice a day
positive effect: He had good control for three years with this medication, it had stop the drops up until now it's becoming less effective
side effects: He had a nasty rash for awhile but it eventually cleared, he bruised really really easy. Try explaining that to the social worker at his school that wasn't fun
comments: This was a really good medication but I think it ran it's course he's been on it for 5 or 6 years now so his body became immune to it
Divalproex (Depakote, Depakote Sprinkles, Epilim)
still being used: No
effectiveness: Positive
positive effect: it's been a while since we last used this drug it worked until it didn't work.
side effects: my sweet kid was long gone after starting this drug.
Topiramate (Topamax)
still being used: No
effectiveness: Unknown
max. dose: 25 mg
positive effect: IT'S TOO SOON TO TELL
side effects: Was Terrible he had an upset stomach, cried all the time on this medication, lost some hair we had to end it
comments: WE JUST STARTED THIS NEW MEDICATION A WEEK AGO AND HE'S STILL HAVING ABSENCE AND PARTIAL SEIZURES EVERYDAY, HE'S HAVING AT LEAST FOUR TO FIVE TIMES A DAY
Levetiracetam (Keppra)
still being used: No
effectiveness: Negative
positive effect: couldn't really tell whether or not it worked, he didn't stay on it for long
side effects: made his dystonic storms worse so we had to end that drug before we can see the benefits from it
Zonisamide (Zonegran)
still being used: No
effectiveness: Neutral
max. dose: 100 mg a.m 200 mg p.m
positive effect: it worked for certain seizures not for all of them. he's been on this brand for 3 years now and it was a blessing in the beginning
side effects: He suffered with so much side effect from all the other ones can't tell if this had any
comments: We are in the process of weening him off it has made no big difference in the frequency of his seizures
Banzel
still being used: Yes
effectiveness: Unknown
max. dose: 400 a.m. 800 p.m.
positive effect: This is a new drug that was recently approved by the FDA don't know much about it because it is new, My son Neurologist who I trust the most said it has showed to slow down all types of seizures and it's frequency and that is exactly what I need
Surgeries (in chronological order)
Vagal Nerve Stimulator (Implant to stimulate Vagal Nerve)
details: Sept 11,2006 was his operation I would never forget the day because that day is a day we will never forget. His Surgery was done at University of Chicago was in the hospital over night
surgery date: Sept 11,2006
effectiveness: Positive
positive effect: it stopped his Head Drop and his Generalized Seizures for 2 years but now it has returned and might have to have his battery replaced, it is losing it's effect
side effects: Strange voice whenever you rubbed the magnet against the area where the box is. had a soar throat for weeks after the implant
Personal Notes
Hi! Mothers and Fathers out there my name is Latasha and I'm the mother of two beautiful and intelligent kids. My daughter(Aaliyah) who is 5 going on 6 and My baby boy who this story is about (Demarius) age 3 was diagnosed with a febrile seizure in may and the doctors told me that it would never or shouldn't happen again. ten days after being discharged from Christ Hospital (Hope Children) in Oaklawn with a small bottle of valproic acid that was supposedly be give a 1/2 twice a day for precaution. Ten days after being home he was drinking some soda when he suddenly drop the can of soda on the floor and started jerking but this time he didn't have any fever, his body was stiffen as he layed on the floor and his eyes was closed shut. So it was off to the hospital where the doctors told me it wasn't a seizure disorder but they prescribed him a medicine called Klonopin. After taking that he was still having seizures and we spent many days at the hospital the doctors have told me it was apparent to them that my son have a disorder which can be treated with medicine and at first I didn't know what Epilepsy was or how he came down with it. As of today, my son is doing a lot better with the increased medication, but know he's starting to have this moments where he would stare off into space for twenty to thirty seconds and when he come back he looks a little confused! I really don't know what going on but I'm taking him back to the doctors and once I find out what's going on I'll post my information on the update. If any mother is going threw this situation please feel free to e-mail me at tenderroni53@hotmail.com
UPDATE: 11-12-2003
Demarius was doing alot better until this past Sunday night when he had his usual gran-mal type of seizure but this time he apparently had stop breathing for 20 seconds. All I remember was giving my son a bath when he fell back into my arms body went stiff, eyes rolled back into his head and his mouth look as if it had turned blue. I took him out of the tub and laid him on the side that is what the paramedics always tell me what to do when he goes into his seizures, I called his name.His color came back and he was breathing again, he wasn't out of the seizure for about ten minutes he was still stiff but breathing. The adorable and lovable son I grew to love from day one didn't look like the very active and happy child he was prior to the seizure. When he came around he was starting to moan out and he was drooling all over the place. I called his doctor and he has an appointment tomorrow with doctor Phillips(Neurology) we need to discuss his new activity when he goes into his seizure because I'm not use to seeing my child mouth turn blue this had never happen with his other seizure I don't know what brought that own but it frighten me and my mother. I am still unable to see my baby go through this, sometimes I wish it was me and not him that had this problem he's too young to understand but now I think he does know that without his medication he can have an severly seizure attack because when he feels sick he would ask for medicine in his own words he would say "medicine time, medicine time" to let me know he knows that he needs it to live a normal and hopefully one day seizure free life. If this sounds familiar please feel free to contact at me at tenderroni53@hotmail.com
UPDATE: 08-05-2004 DEMARIUS IS NOW 5 YEARS OLD AND CURRENTLY IN SCHOOL WE WAS RECENTLY TOLD THAT MY SON IS AUTISTIC AND HAS ATTENTION DEFICIT DISORDER (ADD) WHICH MADE MY HEART SHATTERED INTO A MILLION PIECES. HE RECENTLY WAS INCREASED IN MEDICINE AND THEY ADDED ADDER ALL TO CALM HIM DOWN A BIT, I DON'T KNOW HOW I FEEL ABOUT GIVING MY SON NARCOTICS BUT BEFORE DEMARIUS ATTENTION WAS VERY BRIEF AND HE WAS VERY HYPERACTIVE BUT NOW HIS ALOT CALMER. WE ALSO RECENTLY DISCOVERED THAT HE IS HAVING WHAT IS CALLED DROP ATTACKS (SEIZURES WHERE AS HE CAN'T CONTROL HIS MUSCLES AND FALLS ALL THE TIME) NEUROLOGIST EXPLAIN THAT THIS TYPE OF SEIZURE IS DIFFICULT TO CONTROL BUT RECENTLY INCREASED HIS MEDICINE IN WHICH NOW IF THIS DOESN'T CONTROL IT THEY ARE CONSIDERING A PACE MAKER IN HIS CHEST AND I DON'T KNOW IF I LIKE THAT IDEAL. AT FIRST WHEN MY SON WAS ALWAYS FALLING PEOPLE THOUGHT HE WAS CLUMSY AND I THOUGHT MAYBE HE WAS A BIT CLUMSY BUT FALLS ALL THE TIME NOW, THEY RECENTLY SENT HIM HOME FROM SCHOOL DUE TO HE HAD A SEIZURE WHERE HE WOULD CROSS HIS LEGS (JOINTS WAS LOCKED) HE TREMBLED, AND HE HAD THIS BLANK LOOK IN HIS FACE, I CALLED HIS DOCTOR AS SOON AS I GOT HOME AND THEY TOLD ME THAT THIS SEIZURE WAS A SEIZURE BEEN ABORTED (I WAS VERY CONFUSED ABOUT THAT MYSELF) HOW CAN A SEIZURE BE ABORTED? AND WHEN HE GOT HOME HE WENT STRAIGHT TO SLEEP SO I KNOW IT WAS A SEIZURE. I'M CURRENTLY ATTENDING ROOSEVELT UNIVERSITY BUT MOST OF MY TIME IS SPENT WORRY ABOUT MY SON, NOW THAT HE'S IN SCHOOL AND WITH HIS RECENT DIAGNOSIS AS AUTISTIC AND HAVING ADD. I DON'T KNOW HOW OUR FUTURE LOOKS. IF THERE IS ANOTHER PARENT GOING THROUGH THE SAME AFFECTS COULD YOU PLEASE E MAIL ME AT
it's been a few years since I been on this site, now I'm back with the update. My son was recently told that he have LGS (Lennox Gas taut Syndrome), this was a blow but deep in my heart I kinda knew in my heart but lived in denial for many many years until his latest EEG report, which showed him having burst of electrical activity showing while he's asleep, when he's going to sleep and when he's awake (basically all the time now), his behavior had change dramatically once the sweet loving, child has fits of rage and aggression all apart of the syndrome the doctor says. He's been on almost every medication known to man kind and it's still hard to control his seizures, his sleeping habit has changed, he's still not toilet trained , his posture is a lot worse he's walking like a 80 year old man which is so heartbreaking and sad. His school is wonderful (HillCrest) they work with him and whenever he's not Seiz he's excited about going to school, he tries to make friends but still can't because he just don't know how too, his drooling has becoming worse his Dystonia (movement disorder) that was finally confirmed in 2006 by Doctor Kenneth Silver at University of Chicago is also uncontrolled thanks to his seizures.
Contact info
For additional information, please send e-mail to Latasha (latasha3472@gmail.com)
